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What I found most interesting in this study (assuming I've understood this) is that the reduction in cerebral blood flow (CBF) was correlated with symptoms *and* the CBF reduction was found even in ME/CFS patients who had normal heart rate and blood pressure on the tilt table test. Even if...

I was able to download the PDF from the science direct web page. The download link is at the top of the screen. It's a pre-print copy but the images are better than the one you posted.

Thanks @Michiel Tack :heart: Just retweeted your thread.

Do we have any forum members who live in Florida? This action looks worthwhile since there's already a letter that's going to be sent to the NIH. The letter sponsors are just looking to get more signatures. I find sending email to government officials is a rewarding form of activism. It's not...

Here's a tweet from MEAction UK announcing this action (probably also posted on Facebook but I don't use that): https://twitter.com/MEActNetUK/status/1225423154790719491 (FYI, I don't know anything about this action, I just posted the info. Sorry for the duplicate post, @Sly Saint )

#MEAction UK has a new project called "Take ME Seriously" Update: Anyone can join in this advocacy action. It is not just for UK residents. They are collecting comments and signatures regarding the NICE (National Institute for Health and Care Excellence) ME/CFS treatment guidelines in the UK...

Assuming that a bar stool is the same thing as a kitchen stool then my solution is very similar to what Trish described. I even do the same thing with opening the doors under the sink when I move the seat there! The only thing I'd add is that I put sliders on the feet of my stool. [look up...

So sorry you have this orthostatic hyPERtension, @Marky I think that it must be even harder to treat than the delayed hyPOtension that I get (and which I think is more common). I have both NMH and POTS. In case it's helpful, here's a link I saved a while ago with some information from Dr...

By the way, I just noticed the little circled "R" next to Invisible Disabilities (not the whole phrase Invisible Disabilities Association). I now remember that this group was the one who successfully trademarked that phrase, a phrase that seems to be generic and should not have a trademark. I...

FYI, here's the Invisible Disabilities Association web page listing all the 2019 awards: https://invisibledisabilities.org/seminarsandevents/2019-ida-awards-gala-invisible-no-more-the-reveal-10-18-19/#awards And the page describing the 2019 Media Impact Award...

The Solve M.E. group is organizing another ME/CFS Advocacy Week this year for April 19 – 26, 2020. A limited number of folks can get financial aid to help them to make the trip to Washington, DC. You must register to be eligible. The deadline is Friday, February 21. There are a lot of links...

@Emily Taylor - Is there any additional information on this plan that the Dept. of HHS is required to submit? When did the 90 days start? What day is the deadline? Who in Congress (if anyone) is tasked with enforcing delivery and/or execution of this plan? Just wondering how things work...

I think they must have removed that photo? Maybe they got complaints? Here's a screen shot that I just took of the CME & Education page on Medscape and there is no photo for the ME/CFS item.

Thank you @Naomi10 for your blog post :heart: This month, Jan. 2020, marks 30 years of illness for me, too. However, I was not nearly as young when I got sick. I was 29, not young girl. Also, I don't have a specific date. Mine was not a sudden/instant onset, but also not a gradual onset...

MEAction has an article reporting on their "Cards to Koroshetz" campaign. They asked folks to send holiday cards to Dr. Koroshetz, Director of NINDS (National Institute of Neurological Disorders and Stroke) at NIH, to tell their stories about living with ME...

I love this art project about ME using book titles! #MEAction tweeted about this artist recently, which is how I discovered it, but here's a link to her instagram showing the latest project: But if you want to share on twitter here's a link to the thread by #MEAction...

I'm similar in that, for the most part, my symptoms come from physical overexertion. Not too many symptoms (but not zero) come from cognitive exertion. But there's one major difference. I can go for a pretty long time without feeling any overexertion from cognitive tasks IF it is a solitary...

Just for completeness here's the link to the AP news website which has the text for the story along with photos and video: https://apnews.com/4bc281b36227afb674649cdf9f137be2 Edit: The video was also posted on the Associated Press YouTube channel which has 1.1 Million subscribers.

I've managed to listen to part of this and it sounds pretty good. FYI, no transcript available yet (that I can find) but it may be that one will be provided later.

Interview starts at 2 hours 5 minutes: https://www.abc.net.au/radio/programs/rhiannapatrick/rhianna-patrick/11831752 Tweet from Mark Guthridge for those on twitter https://twitter.com/Dr_M_Guthridge/status/1214570526687006721